Three months after retiring from 32 years in the medical field, I developed Scleroderma.
I performed mammography for all those years and suddenly my hands were stiff and unable to move. Within 3 weeks the skin had stiffened up to my elbows. My rheumatologist just told me to take Cellcept 500mg and come back in 3 months.
My husband and I then searched the internet for a scleroderma specialist in NY where we are from. In the meantime I’m unable to walk a short distance without getting fatigued. Unable to sleep, the body and joint pain was unbearable. I couldn’t do much due to the constriction of my hands wrists elbows knees even my feet. I cried myself to sleep very quietly. I’m not one to show my pain.
I was always very active not one to sit down and relax.
Always doing something. I found an awesome Dr in NYC. He started me on methotrexate and Humara. My skin had gotten so hard that it was difficult to inject the Humara. I was then put on Rutuxan infusion for about a year and a half. It helped to a point but stalled. My Dr then had a trial drug which I am now still doing. I have 2 more visits. Then I will have been on the trial drug for a year.
My skin has just about all cleared and is soft again. I now embrace my facial wrinkles. I’m 68 years old. Unfortunately my elbows don’t fully straighten out and my wrists and fingers are very constricted. I suffer with many ulcers on my knuckles and of course Raynauds. I’ve gone through hand therapy a few times and may see a hand surgeon when the trial is complete. I’m so grateful for this trial drug. I never thought I would get better.
I should say that when I retired both my elderly parents had gotten sick at the same time and I was their caregiver.
So all the stress I had been going through was not helping my condition. I’m so grateful that I had no organ involvement. Some digestive issues and severe anemia. I still have to get Procrit shots and an occasional blood transfusion. It’s been a very very rough 3 years. Especially during Covid my trial went on hold a while.
There’s lots more to this story but that’s it in a nut shell as they say.